Welcome to the Virtual MS Center!
Ask any question you want about Multiple Sclerosis and one of our experts will answer it as soon as possible.
This website's name is HealthCare Journey because we want to provide people with MS a roadmap or 'how to' for managing their multiple sclerosis using the best information and resources possible. We have been very busy getting the website up and running, and now we are finally getting around to creating the "HealthCare Journey for MS" but WE NEED YOUR HELP! We have put together a starting point, but we want all of YOU to help us refine it. Below are the steps of the journey...what do you think of them? Now here is where we want your feedback and input. For the first step, "I Think I Might Have MS", here is what we have put together...SEE JOURNEY If you are newly diagnosed, or if you have had MS for 30 years, we want to know what you think of what we have put together.
Please help us create this first step of the journey. As the weeks pass, we will post the second part of the journey, followed by the 3rd and 4th for your review. So far, we have shared this with many people, and they say it is a big help (and those that have had MS for a long time say they wished they had had this when they were wondering if they had MS). Do you agree?
0 Comments
Here is My Question:
Hi, I am currently on Tysabri and am planning a European trip this spring for 3 months. Is it possible to stop therapy for this long and then start taking it again once I get back? Answer: Relapses can occur as early as 3 months after stopping Tysabri. It is okay to go 8 to 12 weeks between infusions if required but you should know the risk before making this decision, so definitely speak with your physician. If you previously relapsed shortly after stopping Tysabri then you are at more risk this time. Most relapses occur 4-6 months after stopping Tysabri . Good luck and have a good trip. Rip Kinkel MD PLEASE NOTE: The information/opinions on this site should be used as an information resource only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition. Here is My Question:
I have been on the Terry Wahl's protocol for 6 months now. I was getting better, rode on my stationary bike 26 miles this month and things were looking up. Well, I am going through a relapse now, and I'm barely walking. The side effects on the meds are ridiculous, and I read that people with progressive MS don't really benefit from meds at this point. I see that it took some time for Terry Wahl's to recover. But it's the relapse that scares me. I shouldn't be regressing. Any thoughts? Answer: Relapses indicate ongoing inflammatory disease activity, and up to 30% of patients with "progressive" MS can show signs of inflammation in the brain and spinal cord. The reason why I point this out is that the disease modifying therapies (11 FDA approved DMTs to date) have all shown that they mitigate inflammatory disease activity. While side effects are recognized with any DMT, many times they are short lived and managable with the help of a trained MS specialist. I would encourage you to read through my prior blog post (HERE) and discuss this with your physician. A. Scott Nielsen MD Q: How concerned should I be about Tecfidera now that there has been a death?
A: To answer your question, we have written this blog READ MORE Here is My Question:
I have seen deep tissue massage do wonders for my clientele. Has it been considered as a possible therapy requirement for MS patients? Are studies in universities on deep tissue massage for MS patients needed? Massage therapy including deep tissue massage is one of the most common complementary therapies used in MS patients. It does wonders for increased muscle tone and pain, can improve circulation and perfusion in areas that are constant pressure points (low back and buttock etc) and help improve range of motion. The NMSS web site has a page of information related to massage therapy for MS http://www.nationalmssociety.org/Treating-MS/Complementary-Alternative-Medicines/Massage-and-Body-Work Rip Kinkel, MD Here Is My Question:
Am I loosing nerves? I've been loosing the ability to use devices with captive touch screens. It's gotten to the point that I've had to start using a cap active stylus. From what I understand of the technology this means I'm loosing the ability for my nerves to generate a sensible charge. Is this possible? Answer: Today’s touch screens work on the principle of capacitance. A capacitor is a device that holds electric charge and when you touch the device with a material that acts as a conductor some of the charge will transfer to this conductor. The human body, because it is made up of a large amount of water filled with ions (such as sodium), can act as a conductor of electric charge. When someone touches a touchscreen they pull some of the electric charge away from the device; because the amount of charge in the device is known, changes in this charge can be detected and used to drive the device. (See http://www.computerworld.com/article/2491831/computer-hardware/how-it-works--the-technology-of-touch-screens for an excellent description of the technology.) In multiple sclerosis, over time there can be some loss of nerve fibers (called eurodegeneration), which likely contributes to the changes in body function experienced by those with MS. However, because the skin is covering the body’s tissues (approximately 4 mm in the hand), separating the nerves and other structures from the environment, it is unlikely that loss of nerve fibers would contribute to the charge that your body holds. Instead, one potential culprit that may explain the difficulties that you are experiencing is the composition of your skin. There have been some reports that some people (including those who don’t have MS) of having difficulties with touchscreens; people in the technology world have started calling this “zombie fingers”. Some have suggested that dry skin or calluses can get in the way of the electric charge being transferred between the device and your finger. In our lab where we can measure the resistance of people’s skin to transfer of electric charge, we have anecdotally discovered differences in resistance that appear to be related to the composition of the skin itself. Unfortunately, I have been unable to find a solution for this problem and it appears that most people who experience this problem resort to using a stylus, as you have done. One other possibility may be that there can be some charge transferred between other fingers that may come very close to or are contacting the screen itself while you are using your finger on the screen. -Stephanie Jones, PhD, is an MS researcher at the University of Massachusetts Amherst currently conducting a study on the relationship between skin sensation and balance in people with MS. From HealthCare Journey: If anyone reading this lives within 50 miles of Amherst, MA (free transportation to/from the study is provided) be sure to read about the study Stephanie and her team are conducting here...SENSATION AND BALANCE STUDY Here is My Question:
I am very nauseous and as a result am finding it difficult to get food down but I am keeping it down. The nausea feels as bad as a bad bout of morning sickness (which it isn't). I am on Tysabri. I am drinking fluids but they seem to be going right through me (no diarrhea though). Is this likely to be gastroenteritis? Answer: Severe nausea and thirst with frequent urination may be a sign of an underlying medical condition that could be serious. This is not a likely side effect of Tysabri. You need to have a medical evaluation soon to figure out the cause, which is usually easy to do with a full history, examination and common blood and urine tests. If you feel faint or lightheaded (sitting or standing) or have an irregular heart beat or palpitations, you should probably be evaluated as soon as possible in an urgent care center or emergency department if you can not reach your doctor’s office. Hope you feel better soon Rip Kinkel MD Here is My Question:
What is the difference between Tysabri and Copaxone? Answer: Although there have been no head to head comparisons of Tysabri and Copaxone, a simple comparison of clinical trial results in relapsing MS patients suggests that Tysabri is far more effective than Copaxone as a treatment for MS. For instance in relapsing remitting MS patients, 1. Tysabri decreases relapse rates by 67 % whereas Copaxone decreases relapses by 29 % 2. Tysabri decreases disability progression by 42 % whereas Copaxone has not been demonstrated to decrease disability progression Tysabri is a monoclonal antibody that blocks an adhesion molecule required for immune cells to gain access to the brain; it is given once every 28 days by IV infusion. Copaxone is a subcutaneous injection self administered daily or three times a week. The exact mechanism of action is unknown, but it is believed that it may alter or modulate immune responses in people with MS. There are few if any long term risks of treatment with Copaxone although the injections often hurt and cause reactions under the skin. Long term treatment may result in loss of subcutaneous tissue at injections sites called lipoatrophy. Tysabri is associated with hypersensitivity reactions during the infusions in about 5 % of patients. These reactions almost always occur between the 2nd and 6th infusion. Rarely, patients can develop a severe brain infection called progressive multifocal leukoencephalopathy (PML) , most commonly after more than 2 years of therapy. The risk of PML is very low in patients who are JC virus antibody negative and have never received immunosuppressive treatment (see prior blogs on tysabri therapy) Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego |
PLEASE NOTE: This information/opinions on this site should be used as an information source only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.
Archives
March 2024
Categories
All
|